What are your endometriosis symptoms like? For me, my symptoms have been intense cramps, so painful that I would vomit. Back pain, leg pain, hip pain, painful bowel movements, rectal bleeding and digestive issues. Pain when my bladder is full and when emptying. Extreme fatigue and headaches. All of which brought on severe anxiety about my health.

What was your journey to diagnosis like? My symptoms began at 11 with my first period. I had been told to expect some cramps and discomfort for a day or two. The pain was unbearable from the start but I thought this must be normal. After a year of periods that would be so heavy and painful that I would vomit, my mother realized this was definitely not normal and took me to the doctor. I was prescribed Naproxen at 12 and while it did help somewhat, I was still unable to go to school or function for 3 days each month. I was referred to a gynecologist at 13 and had an ultrasound. They found an ovarian cyst the size of a grapefruit and I was scheduled for surgery a few months later, just after I turned 14. It was during this surgery that I was diagnosed with stage 4 endo. My gynecologist said it was the worst case he had seen in someone my age. I was told at this young age that I may have trouble conceiving a baby someday.

What was your experience with treatment for endometriosis been? Once I was diagnosed via laparoscopic surgery at 14, I was told to manage with anti inflammatory medications. They took the edge off of the extreme pain but I was still unable to go to school or participate in anything a normal teenager does during my periods. I couldn’t get out of bed. When I was 17 my gynaecologist told me of a new procedure to remove endo. Ablation with a laser. I had my first ablation surgery and I was so hopeful for some relief. It did not work. I was then prescribed Lupron which brought on awful side effects and I had to stop treatment. After this I was prescribed many different types of birth control until we found one that didn’t make me ill. I managed my symptoms on the pill for 8 years before I got married and we decided to try to get pregnant. After a year of trying, my gynaecologist recommended another ablation surgery to remove endo in hopes of improving my fertility. It did not work and my pain and other symptoms were steadily worsening. I was sent to a fertility specialist for investigation and treatment. After many failed treatments I took a break and was sent to another fertility specialist out of town, where I had another ablation surgery to prepare for IVF. It was successful and I had twins. But the hormonal treatments caused more pain and symptoms to steadily worsen. I had another ablation surgery when my twins were almost 1. I went back on the birth control pill but due to migraines with aura starting soon after, I had to stop. Which lead to my symptoms worsening to the point that I was having pain all month long not just during my periods. My gynaecologist suggested a hysterectomy and oophorectomy at 34. I almost went through with it but cancelled and tried to manage as best as I could. More large endometrioma cysts were found on ultrasound and I was again advised to have an oophorectomy and hysterectomy. It was then that I decided to do more research about proper treatment of endo. I found groups on Facebook and this is where I learned about excision surgery. After so many failed surgeries and treatments from the time I was a young teen, I was relieved but also angry that this was not the standard of care for all endometriosis sufferers. Multiple ablation surgeries had lead to extensive scar tissue and damage.

How does endometriosis affect your day-to-day life? This disease has dominated my life for 30 years. It kept me from attending school regularly, going out with friends, participating in extracurricular activities, I had to give up dance which was my passion as a teen. It affected my ability to travel, enjoy time with my husband and kids while stuck in bed. My mental health has been severely impacted by my illness and medical trauma from multiple surgeries and tests. Also the effects of people not believing it was as bad as I was saying. Symptoms being dismissed by doctors and even friends and family. Feeling so much guilt for having to cancel plans, avoiding sex due to the pain and especially feeling like a failure as a mother to my kids.

How does endometriosis affect your emotional well-being? I have struggled with severe anxiety and panic since my symptoms began. I would dread my period each month because I knew how sick I was going to be. Once the surgeries and invasive tests began it only worsened. I have insomnia and have gone though many bouts of depression and suicidal ideation. I struggle with incredible guilt and worry that I haven’t been a good enough mother to my kids because of so many days being sick, spent in bed not being able to do everything I have wanted to with them. I have been diagnosed with medical PTSD due to botched surgeries, post op complications and being dismissed by doctors. Luckily I have a very supportive husband who has been here for me through the worst of it and helped me to get the help I needed.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I had to give up my career of choice due to my illness. I knew that I could not manage college or university with all of the symptoms I had and missed days each month. I settled for a job I could train for on site and with some correspondence learning. I still wish I had been able to follow my dream. I currently can only manage part time work due to the amount of days I have to call in sick.

How have you found hope and support in your endometriosis journey? I was so thankful I came across groups on Facebook that were dedicated to providing education on excision treatment of endo and to be able to talk to others dealing with the same thing. I felt very isolated with this disease for most of my life. When I was finally referred to an excision specialist, I felt seen and heard for the first time. I cried with happiness on my way home from my first appointment. I knew I was finally going to get the care I needed. 24 years after my diagnosis.

What do you think healthcare for endometriosis in Canada should look like? There should be no further use of ablation to treat endo surgically. Excision should be the standard. Hormonal treatments only cover up the symptoms they do not stop the progression of disease. For many, the side effects are unbearable. If excision is done early, it can prevent years of unnecessary surgeries and treatments and possibly improve fertility. I don’t want to hear more stories like mine years from now.

What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis is more than just a painful period. It affects the whole body not just the reproductive system. It affects quality of life and needs to be taken seriously and treated accordingly.